Thursday, November 7, 2013

It is just a little over a year since the passing of our founder and dear friend, Jennifer Jaff, who will always remain with us in spirit. To commemorate her extraordinary contributions on behalf of those with chronic illness through advocacy, education and public policy, we have changed the name of our organization to The Jennifer Jaff Center.

We are very pleased to announce that our new website, www.thejenniferjaffcenter.org, is now online! You will find all of the detailed information you've come to expect from us as well as some updated features to make our site more user friendly. The format allows us to easily edit and update information and our blog is now incorporated directly into our website.

Wednesday, August 14, 2013

Looking for an unforgettable event that supports a great cause? Join Get Your Guts in Gear for the 2013 Rides for Crohn’s and Colitis.

Get Your Guts in Gear, Inc. (GYGIG) was founded in 2003 to promote empowerment and awareness, and to raise funds for Crohn’s disease, ulcerative colitis, and ostomy advocacy. GYGIG brings together patients, family, friends, medical professionals, and cycling enthusiasts for an unforgettable and empowering experience. More than just bicycle rides, our events are the foundation upon which GYGIG has built an inspired and empowered community that carries our mission forward 365 days of the year. Whether you’re an avid cyclist looking for a great ride, a novice rider looking for a challenge, or you’re interested in spending the weekend as part of our support crew, we invite you to become part of this inspiring community.

Please visit www.ibdride.org to receive additional information on upcoming events or find us onFacebook to get to know us.

Two Rides, Two Life-Changing Events!

New York’s Hudson River Valley: June 7-9, 2013

The Midwest / Wisconsin: August 23-25, 2013

Signature 2-Day Ride:140 miles with an option for back-to-back century ridesJoin us on Friday evening and ride with us on Saturday and Sunday. Ride 140 miles, 170 miles, or add a century loop on both days for 200 fully supported miles.

NEW: 1-Day Cycling Option:62.5 miles with an option for a century rideJoin us on Saturday afternoon and ride with us on Sunday. You can choose 62.5 or 100 fully supported miles.

In order to participate in our century option on either day, you must average more than 15mph over varied terrain.

Don’t want to ride? Join our volunteer support crew from Friday evening through Sunday and become an integral part of this supportive community while providing the backbone of the event.

Get Your Guts in Gear’s riders and enthusiastic volunteer crew participate – and keep coming back – because they find physical strength and emotional resolve they never knew they had, and are awarded with an accomplishment they can share with their new friends long after the Ride is over. These cycling events offer the IBD and ostomy communities a positive, life-altering experience in their journey. Participants also draw support from fellow riders, many of whom are touched in some way by inflammatory bowel disease or who have had ostomy surgery.

For the full 2- Day Ride, rider registration is $85, with a fundraising minimum of $1,250 per event.

For the 1-Day cycling option, rider registration is $65, with a fundraising minimum of $650 per event.

For crew members, registration is $85, and fundraising is optional, but supported and encouraged.

Fundraising supports Get Your Guts in Gear, Inc. as well as the Crohn’s & Colitis Foundation of America, the United Ostomy Associations of America, and Advocacy for Patients with Chronic Illness, Inc.— organizations committed to supporting patients, conducting research for inflammatory bowel disease, and raising awareness.

For more information, please call GYGIG at (866) 944-6848 or email us at info@ibdride.org. Riders and crew 18 and over may register online. For information concerning riders and crew ages 12-17, call to obtain registration forms. For more information and answers to FAQs, please visit www.IBDride.org.

Friday, August 9, 2013

Congratulations to Gloria Steinem and the other recipients
of the Presidential Medal of Freedom! Gloria Steinem, in addition to being a prominent
writer and civil rights activist, has long been a supporter of Advocacy for
Patients. She also was a close personal friend to our Founder, Jennifer Jaff. Her
tireless work for women’s equality and the advancement of civil rights for all
makes this recognition well-deserved. Congratulations Gloria!

Tuesday, July 30, 2013

We get a lot of questions from consumers about health reform and what to expect in 2014. This new video, from the Kaiser Family Foundation, provides a great overview of the major changes in the ACA, including the way Americans will access health coverage and what it will cost.
"The YouToons Get Ready for Obamacare," The Henry J. Kaiser Family Foundation, accessed July 30, 2013, http://youtu.be/JZkk6ueZt-U.

If the video does not format properly, please follow the link above to watch on YouTube.

Tuesday, July 9, 2013

Check out this timely article from Lynda Schrager on how to travel with a health condition. She provides great tips to organize and prepare for your trip, as well as suggestions to enhance your vacation experience!

Lynda is a breast cancer survivor, mother of a child with Crohn's disease, and daughter of parents who have had every disease in the book. She is the author of Otherwise Healthy®: A Planner to Focus Your Thoughts on Organizing Life after Being Diagnosed with Breast Cancer. She writes a weekly health column for the Albany Times Union called The Health Organizer. It appears in newspapers throughout the country. Lynda is the only member of the National Association of Professional Organizers specializing exclusively in the area of organizing health information, presenting keynote addresses and workshops in the area of breast cancer treatment, survivor issues and health and wellness.

Monday, June 17, 2013

Yesterday was a
Sunday like any other - I was working on my Masters thesis and transferring
various loads of laundry from washer to dryer and contemplating vacuuming my
house instead of watching The Golden
Girls marathon on tvland (The Golden
Girls won, by the way) when I remembered that my dog Beckett was out of his
favorite beef-flavored treats. Since there is very little Beckett can eat
thanks to a finicky digestive system that is probably the combined result of
his slow-to-develop “runt of the litter” organs and my reliance on the most
natural (read: most expensive) foods and treats on the market, I didn't want
him to go through the week without the little freeze dried chews he looks
forward to whenever he goes into his crate. So, even though I contemplated
staying inside where it was warm and quiet, my “mommy guilt” got the best of me
as I grabbed Beckett’s harness and leash. “Wanna go to Petco?” I asked. An
unnecessary question, since I could barely get him into the car he was so
excited.

The second we walked into the store,
Beckett, who has memorized the layout and is, like me, a creature of habit,
dragged me over to our regular first stop: the ferret cages. We always visit
them first, and he loves to stand on his hind legs and peer at them while they
slither around and play with each other and pretend to ignore him. He whines
and paws and seems to think they can’t see him, though I suspect they fancy
themselves better than him, as they turn their little noses up toward the
ceiling and go about the business of simply being ferrets. As usual, though,
his attention for the ferrets was short-lived yesterday, and within minutes he
was pulling me toward the bird cages. Once again, he was on his hind legs,
front paws in the air, head titling from side to side whenever the birds
tweeted at him. I can never tell whether he is happy or sad to be outside their
cages while they are locked inside, and I often wonder, when I look at him
wanting so desperately to play with his little friends, which side seems more
like captivity to him.

After Beckett sniffed a cute little
cocker spaniel and failed to amuse an older, lethargic looking golden
retriever, I finally coaxed him into the “cookie aisle” where he enjoyed his
usual sniffing expedition of all the rawhides and meat-scented chewy things
displayed at nose level. While I searched for the correct package and
contemplated a new brand of biscuits, Beckett smelled and groaned and did his
best to lick everything his little tongue could reach. Finally, I pulled the
regular cookies off the shelf and did my best to tug Beckett toward the cash
register. As usual, I had planned on a quick in-and-out, and, as usual, Beckett
had planned on tasting everything (and everyone) he could reach.

As we headed to the front of the
store, I stopped to price a package of squeaky toys hanging on the end of an
aisle. And that was when a woman who looked to be about my age approached
me.

“He’s
a sweet dog,” she smiled and nodded toward Beckett, who by then was frantically
pawing at the pork bones just beyond his paws.

I
thanked her, always worrying that I sound immodest when I admit that I actually
do, in fact, have the sweetest dog on the planet.

“Is
he good with children?” she went on. I wasn't expecting that question, so I
stuttered a bit before responding that, yes, he loves children, though he tends
to jump and lick any person short enough to serve as a potential playmate, so
perhaps not all children would agree.

“My
little boy … was wondering ...” she hesitated. “He asked if he could pet the
black doggie. So I just thought I’d see …”

“Oh
of course he can,” I replied, saving her from what seemed to be an awkwardness
I couldn't quite understand. After all, I was dressed in my Sunday sweat pants,
unimposing pony tail, feeling relaxed and approachable and open to conversation
(which isn't always the case, I admit with some regret), so I wasn't sure where
her discomfort was coming from.

Until
her son walked around the corner. He was a beautiful little boy dressed in
overalls and a turtleneck. He had a sweet, diamond-shaped face that looked too
small for his large, square glasses. And he would not – could not – look at me,
even when I said hello. He did, however, fix his gaze on Beckett while he
pointed and repeated “pet the black doggie, pet the black doggie, pet the black
doggie” over and over and over again.

“Yes,”
his mother said. “You can pet the black doggie.”

Then
she looked at me, seeming to struggle for words, until she was finally able to
explain that her adorable son, who is seven, was diagnosed with autism several
years ago. She and her husband had been wanting to get him a therapy dog, but
he was so terrified of dogs that he become inconsolable and often aggressive
anytime a dog was nearby. On the advice of one of the child’s counselors, the
parents had been bringing him to Petco as a way of gradually exposing him to
leashed, well-behaved dogs in a controlled environment, and so far, the mother
told me, it had been working pretty well. The little boy could now walk through
the store, could see and hear and even be in the same aisle with another dog,
and not get upset. “Most of the time,” she added with a chuckle.

“But
your dog is the first one he has ever wanted to pet,” she almost
whispered. She was trying not to cry,
and, in all honesty, I was fighting back some tears myself.

“How wonderful,” was all I could manage,
before squatting a safe distance away from the little boy so I didn't crowd
him. “His name is Beckett,” I said. “And he would love for you to pet
him.”

Inside
I was panicking. At seventeen months of age, Beckett is just now coming to
terms with some of his training – probably because, after fifteen months as Beckett’s
mom, I have finally learned how to train him (which first involved training
myself). Even so, he still suffers occasional lapses, particularly in public
places where he is overstimulated and more than willing to suffer the
inevitable “Time Out” later for the sheer pleasure of misbehaving now. But this
moment was critical. A lapse for Beckett could become a lifelong fear of dogs
that this little boy would always trace back to today.

As
I thought about all the things that could go wrong in this scenario, imagining
every possible negative outcome, I suddenly realized that Beckett had stopped
sniffing and pulling and begging for the bones and toys spilling out of the
rack above him. Instead, while I had been talking to the boy’s mother, Beckett
had been sitting perfectly still, staring at the little boy, the little boy
staring back at him, both of them looking away from each other now and then, but
neither of them reacting to anything outside of whatever communication they
were having. Not even when other dogs walked by.

So
I did the only thing I could do. I knelt beside Beckett and said “It’s ok, buddy. Approach.” I was ready to pull his leash
tight if he started to jump, but I could see, without a doubt, that he knew. He
couldn't jump. Not this time. And he wouldn't. Instead, he approached the
little boy slowly, gently, pushing his nose toward the tiny, outstretched hand
until, eventually, child and dog touched. The little boy wiggled his fingers
and Beckett licked them. The little boy waved his arms and Beckett followed
them. The little boy crossed his legs and Beckett laid beside them. The little
boy put his hands in his lap, and Beckett rested his head on top of them.

And
we stayed like this, in silence, for twenty minutes. There was nothing else in
the world except a mother and me, watching a little boy stroke Beckett’s head,
his back, his tail.

“We've
been working on this for years,” was all she seemed able to say. Though she was
doing better than I was, as I stood there speechless, relieved, proud,
inspired.

Before
we parted, I gave the mom my phone number and told her that I would be happy to
arrange get-togethers between her son and Beckett, if she thought it would
help. She thanked me and assured me that she would call. And I hope she does.
But more than anything, I hope that this beautiful little boy will now be open
to the possibility of a therapy dog, and I like to think, if he is, that maybe
Beckett had something to do with that.

It's
funny how, even though instinct never fails me when I pay attention to it, I often
doubt myself and others, always letting my fears interrupt the natural flow of
things. Thankfully, Beckett knew what to do yesterday. And, despite my panic, I
knew it was time to let him try. Even the mother who approached me knew that,
scary as it was, she had to let her son pet a strange dog, and she had to have
faith that he would be alright. Still, it was the little boy who taught all of
us to put away our worries and our preconceived ideas and our fears about what
may have happened in the past. To simply experience that single moment, when his
instincts told him that Beckett was safe, when his instincts told me that all I
needed to do was believe in my dog and trust that he would do the right thing. I
am so glad I listened.

Tuesday, June 11, 2013

For those who have
chronic conditions, managing your health usually involves ongoing care and
treatment. And although your health is the
main focus, it’s also important to manage and plan for costs related to your
care. This has always been true for
patients without health insurance. And now, more and more insured patients
including those with chronic conditions are assuming a larger portion of their
healthcare costs, whether they’re enrolled in high deductible health plans or
in other types of plans that require greater cost-sharing through co-pays and
co-insurance. Knowing how much you may
owe for care can help you make informed healthcare decisions. Use FAIR Health’s free website at www.fairhealthconsumer.org to research your out-of-pocket costs before getting
a service or procedure that’s either not covered by insurance or that is
out-of-network. The website offers cost
lookup tools that can be used to estimate out-of-pocket costs for medical and
dental services in every area of the United States. The estimates reflect common plan benefits and
can be adjusted to match specific plan provisions. The amounts estimated are based on the FAIR
Health database of billions of billed charges for medical and dental services.

We invite
you to use the FAIR Health consumer tools to estimate and plan your healthcare
expenses, to inform discussions with your healthcare providers and insurers and
to learn about the health insurance system. We also encourage you to stay in touch with us
by subscribing to our free quarterly consumer e-newsletter
that offers tips on understanding and managing your healthcare costs and via Facebook and Twitter.

FAIR
Health is an independent, not-for-profit organization created in 2009 with a
mission to bring transparency to healthcare costs and health insurance
information. Learn more about FAIR
Health’s mission here.

Welcome to the Advocacy for Patients with Chronic Illness Blog

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